My correspondence with my Senator (Madsen) who voted 'No' on Clay's Law

Hi All,

I've exchanged a few emails with Senator Madsen (local Senator for most of Southern Utah County) and I told him in fairness I'd post his response with my own. He's voted 'No' to Clay's Law on the basis that it hurts local businesses and individuals by increasing healthcare costs. This is true... to a point. It is expected that this law will increase healthcare costs by less than 1% ($40/yr). Big whoop!

Obviously I'm very biased but its frustrating to see that in his mind that the $40/yr is worth more than the possibility of giving kids like Charlie a chance at leading a normal life. He is also shortsighted in that if Charlie gets one year of intensive therapy (25 hours a week) his chances of leading a normal life and being a contributing member of society are 50-70% better. If he doesn't, he will continue on the way he is now, and end up costing the state of Utah between $2.5 - 3.5 million dollars over the course of his life. All that for one tank of gas per year.... Good decision Senator.

Also, if anyone knows how to find out who donated his campaign fund, I'd be really really interested to know that. I'm pretty sure I met a guy last Saturday who's in all their back pockets and I'd like to confirm it...

Anywhoodles, here is our email chain. Its long so you don't have to read it if you don't want to. I've also attached, below our correspondence, a summary of the arguments the insurance lobbyists are raising and my feelings about them. If you've ever wanted to be truly educated on a political issue, here's your chance:

MY FIRST EMAIL TO MADSEN:
Senator Madsen,

I've been told you do not support Clay's law. As a member of your district and as someone who voted for you, I'm frustrated. At http://www.votemadsen.com/principles, you list #4 Governments are established to protect individuals in their rights, not to rule over them.

I wanted to allow you the opportunity to explain to me how voting against Clay's Law adheres to that principle or any others you list, because I feel like it is going directly against this principle, upon which I voted for you.

I don't think I have the right to healthcare that I pay for, but that is being denied me by the Healthcare companies in pursuit of larger bottom lines. I am a 'heart-wrenching story.' My 3 year old boy, who is autistic, is sending us slowly into bankruptcy in the pursuit of allowing him to lead a normal life. We accept that as any parent in that situation should. We are doing all we can to avoid this, but for the 4 hours (20 hours below the recommendations) a week of therapy, we pay nearly 50% of our gross income. My son's story and our progress is documented at fortheloveofcharlie.blogspot.com.

I understand there are arguments against this. I've read Senator Urquhart's position (www.steveu.com) and have given him my feedback. I respect him for that. I have a much greater interest in your position since you are my rep.

So, this is my shot at being fair and open minded about this. I'd love to visit with you, even have you in our home to meet our son and see what sort of effect this has on a family. We live less than a mile away. Even just respond to my email. We have many neighbors and friends in the area that are now watching this vote with great interest. They are looking to us for information/opinions/etc. I'd like to be fair when I post my thoughts to our blogs tomorrow after this vote and so I'd like to hear your side.

Best,
Matt

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HIS RESPONSE

Over the last few days I have spent more time talking to people about
“Clay’s Law” and trying to research and learn more about autism
than I have spent on any other issue this session. I think it is
impossible anymore for someone not to have a friend or family member who
is not directly impacted by autism. The rapidly increasing incidents of
this affliction are disturbing and frustrating. Like treatments for
many conditions, autism treatment seems to be so expensive that it is
beyond the means of the average family, and even if a child receives one
of the treatment protocols that have been developed, a desirable outcome
is far from certain. I cannot begin to understand the frustration,
anxiety and sacrifice that the families of autistic children have to
endure. Nevertheless, my heart goes out to you and your family and I
admire your dedication to your child.

You referenced one of the core principles of good government in which I
believe, “Governments are established to protect people in their
rights, not to rule over them. I strive to make all of my decisions as
an elected official based on the principles in which I believe. If I
abandon my principles then I am simply blowing in the wind, making
decisions based on emotion, personal relationships, lobbying pressure or
what will make me popular with a particular constituency.

Consistent with the principle you referenced, I believe that people who
start and own businesses have the right to create and offer for sale the
products they wish, and that government should not force a business to
create and place on the market a product or products the business does
not wish to produce. Simply because a citizen wishes to purchase a
particular product that is not available in the marketplace, it is not
justification for government to deprive another individual or entity of
its right to produce what it chooses, by forcing them to create and sell
a product against their will.

The solution proposed by “Clay’s Law,” a mandate on insurance
companies to cover autism treatment is certainly an attractive idea, the
emotional part of me yearns to offer relief to your family and others
like yours, some of which are very close to me personally. Based on the
number of emails, calls letters and blue notes I have received, it would
make me very popular if I were to support it. Nevertheless, I have
never voted to support mandates on health insurance companies or to
mandate that any business produce a product against its will. My
position has not always prevailed and health insurance companies already
have thousands of mandated coverages. By the time the autism issue goes
through the legislative process it is likely health insurance companies
will have yet another.

Our healthcare system is in need of great reform. Many if not most of
the problems with our current system are a result of government
regulation. There is not enough time to discuss here all the problems
caused, and costs increased, by government’s meddling in the
healthcare realm. The autism issue could be the impetus for much needed
reform. For example, government removing some of the mandated coverages
and allowing insurance companies and the insured to decide for
themselves the coverages that would be most appropriate on a business by
business, a family by family or an individual by individual basis,
something I would wholeheartedly support and a policy change that would
likely allow you to get the autism coverage you need, and forgo
coverages you don’t want or need. Another proposed reform that would
help you would be to remove the prohibition on purchasing health
insurance policies from out of state providers, since there are other
states where insurance companies offer coverage for autism treatment.

These options would be consistent with the principle discussed above
and all of the other principles I am committed to uphold. I appreciate
your efforts to be “fair and open minded” to those like myself who
have principled reasons we cannot support a government mandate like
“Clays law” as it is currently drafted, and I appreciate your
willingness to include this explanation on your blog. I commend your
civility and the respectful tone of your communication to me.

I fear that if the advocates for autism coverage, the families of
autistic children and those who provide treatment to autistic children,
who have so impressively organized and advocated for their cause, are
successful in obtaining their mandate, they will no longer have the
motivation they currently have to change the system since they will have
gotten what they want. We will have lost a golden opportunity to attain
some real reform and will be left with more of the same. More mandates,
higher costs, fewer employers and individuals who can afford coverage.
That will be the untold tragedy if “Clay’s law” passes.

Respectfully,

Mark Madsen

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MY RESPONSE

Senator Madsen,

I appreciate your kindness and consideration in this matter, also your kind words for our situation. I've seen your response trickle through the neighborhood and among other family and friends in your district. I felt like it was necessary for me to respond because there were points you made I disagree whole-heartedly with.

I understand your stance and sounds like you're convinced that it is principle based, even though that principle cuts both ways. I can see that it doesn't make sense for the government to step in and mandate that Glade's start offering fish sticks to every man, woman and child (though I'd be a happy man). However, with healthcare, it seems a bit more complex and should be looked at accordingly. Heathcare is something that moves beyong the free enterprise market because of healthcare costs, etc. It is essentially a 'mandated' product, therefore needs some special handling... which sadly needs to come from someone with more power than these companies. Is it unfortunate the govt has to step in? Yes. Is it necessary? Yes.

You also mentioned in your email "Based on the number of emails, calls letters and blue notes I have received, it would make me very popular if I were to support it." I'm struggling with this comment. Isn't your job, as an elected official, to represent the people in your district and vote as they'd have it? Are you not our voice? In the Gettysburg Address, Lincoln said this was a "government of the people, by the people and for the people." Maybe I'm missing something, but isn't being a politician the ultimate popularity contest? Shouldn't representing your constituents be the highest priority? Shouldn't all those contacts have some impression as to what the people want? I can appreciate a stance that you can take to the bank, as you've done in your response, saying, "I've never voted for a mandate in my career." But if you're sacrificing the voice of the people just to be able to say at voting time "I've never voted for a mandate in my career" then it is time to reconsider.

I wish you all the best. You're in a tough spot... I understand that. I just needed to express my opposition one last time.

I'm leaving now to go up and watch the vote. I will post the entirety of our exchanges on our blog as promised, so your voice is respected as we share our experience with our friends and family.

All the best,
Matt McGhie

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THERE HAS BEEN NO RESPONSE TO MY LAST EMAIL

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These are some of the negative arguments against Clay's Law:

1. Several legislators brought up the idea of an insurance rider for autism. There are several reasons why a rider is not an acceptable solution. First off, the rider does not help YOU...families who already have a child with a diagnosis. The rider would have to be purchased before a child is born. How many of you would have opted to pay extra for autism coverage before your child was born, just in case they happened to become diagnosed with autism? I can honestly say that I wouldn't have. Young parents are already faced with so many financial strains of having a new baby. The few that might buy into this plan would probably be those that already have autism in their family. So, we know that MANY children still wouldn't receive coverage for their treatment because their parents didn't buy into the rider. Second, the rider that has been proposed by the insurance companies only allows coverage for children from 2-6 years old. It only allows $25,000 a year for coverage, and there is a daily limit of $100. We know that these severe limits would not provide for quality treatment. There is no way that a full early intensive program could be attained with these limitations. Third, There are not riders for preemies, cancer or diabetes. Why is this medical problem not good enough for full health insurance coverage? Lastly, we in the autism community view the rider as a calculated distraction by the insurance lobby, and vote for the rider is a vote against families and children with autism.

2. Another idea brought up by Senators was a government program to provide treatment to children with autism. There are several reasons why we won't consider this either. First of all, we all know that our state is in a budget shortfall. There is no way that they would be able to find the amount of money needed to provide every child with autism with a full early intensive treatment program. If they were to somehow fund it, we know through other states that the reimbursement rates are so low to treatment providers that the quality of care is horrendous. There would never be enough money to provide all children with care at once, so there will be waiting lists. If a Senator thinks that the price tag of Clay's Law being $1.8 million is too high, then they would never be able to get the price low enough for a government program. Lastly, Autism is a medical problem that needs to be addressed by medical insurance, not the state.

3. This bill will only help 30%, so it's not fair to everyone else. While this legislation will only affect 30%, it's a starting point. We need to start breaking down the barriers somewhere. We can't expect to change the law to cover everyone over night. We know that in other states where similar legislation has passed, some of the larger self insured companies have followed suit to be able to compete with other companies in their states. The fact is, we can't regulate all health insurance at a state level. We are doing what we can. The rest of insurance is governed by federal law. We know that President Obama has drafted legislation that would mandate the rest of the insurance plans. You can see this draft legislation by going to the link on the right hand side of UTautismcoalition.blogspot.com.

4. This bill is a mandate. Some Senators are philosophically against forcing health insurance companies to cover certain things. It's hard to get them to look objectively at Clay's Law if they can't get passed the fact that it is a mandate. Senator Stephenson spoke to this today. He talked about how right now, everyone with health insurance is being mandated. We have no control over what is covered and what isn't. Us young families with children who need help are paying the health insurance premiums that are being spent on the oldest generation. We know that 80% of health care costs go to those who are in the last five years of life. Our health insurance premiums are going towards hip replacements, terminal cancer and life extending treatments. We are paying these premiums, but we can't even get treatment for our children, who have their whole lives ahead of them. The other argument against a mandate is that it raises the cost of health insurance premiums for all, thus making health insurance unreachable for many. Claims are made that employers would have to forego coverage for the cost of this mandate. This is simply untrue. An actuarial report of the fiscal effects of Clay's Law documents the maximum likely cost on the insurance ratepayer is 0.85%. This translates to about the cost of a tank of gas per year for each policy holder. The insurance industry's own association - the Council for Affordable Health Insurance - estimates that mandated autism benefits increase premium costs by LESS than 1%. Despite the doomsday predictions from the insurance lobby, there's been no mass exodus of insurers, no businesses throwing in the towel because of this benefit. Indeed, experience indicates the impact on premiums has been negligible. In Indiana, the Department of Insurance called the financial impact "unmeasurable" even years after the coverage became effective.

5. Treatment isn't proven....Behavioral interventions are based upon decades of scientific investigation with individuals affected by a wide range of behavioral and developmental disorders, including autism. Specifically for children with autism, research demonstrates the efficacy of ABA in teaching complex communication, social, play, and self-help skills, and in reducing disruptive behaviors. Numerous long-term outcome studies (e.g., Lovaas, 1987, McEachin et al, 1993) document that 40-50% of children who receive early intensive ABA treatment achieve: Higher educational placements, Increased IQ levels, Perform successfully in mainstream educational settings, and Become indistinguishable from same-aged peers.

6. There was a request for a "Sunset" to be added to this bill. A sunset would mean that the cost of this bill would be studied at a later time to find out if it lived up it's claims of staying below a 1% increase in cost to policy holders. If the bill were to cost more than 1%, the bill could be taken off the books. We are confident that our numbers will stay this low. There has been much research done on the cost to policy holders in other states with mandated coverage as mentioned in #4. We will likely agree to a sunset to be added to the bill if this is what it takes to get it passed.


Thanks all.